“Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”

-Dr. Atul Gawande, Being Mortal

A Common Story

John Smith has an inoperable brain tumor and is showing early signs of dementia. Five years ago, while in good health, John met with his attorney and signed a Health Care Directive, naming his second wife, Betty, as his Health Care Agent. In his Health Care Directive, John indicated his treatment preferences: if he was in a terminal condition or state of permanent unconsciousness, he wanted his Health Care Agent to “allow my natural death to occur.” John put his Health Care Directive in his file, and hasn’t looked at it since.

John’s physician meets with John and Betty and tells them there is nothing more he can do for John. John has about six months to live, and is no longer able to make his own medical decisions. Betty reads John’s Health Care Directive and doesn’t know what to do. What does “allow my natural death to occur” mean? What did John want in this situation? John and Betty have never discussed it, and Betty and John’s children from his first marriage cannot agree on the medical decisions that need to be made.

Although this is a fictitious account, most of us have faced or will face similar issues with aging parents or spouses. Having to make such decisions, despite having to a Health Care Directive, can cause tremendous emotional turmoil for both the Health Care Agent and the family, often resulting in delays in making necessary decisions as well as fraying the fabric that ties families together. How are Health Care Directives used in such situations, and how can the legal and medical fields assist in the process?

Health Care Directives: The Legal Perspective

No estate plan is complete without a Health Care Directive. The purpose of a Health Care Directive is to allow a client to express his or her wishes with regard to end-of-life care. The U.S. Supreme Court in the case of Cruzan v. Missouri made it clear that without clear and convincing evidence of a person’s wishes regarding the removal of life support, the state can require that a person be kept alive through whatever means are necessary.

Health Care Directives generally name a Health Care Agent to make medical decisions if the client becomes unable to make his or her own decisions. Most Health Care Directives will also allow the client to specify treatment preferences in the event of certain medical conditions.

In many cases, the client chooses a treatment preference to: “allow my natural death to occur.” But what does that mean? Because of tremendous advances in medical care, many of us do not know how to answer this question. Our experience advising families in this situation reveals that there is frequently a gap between the “black and white” provisions of the Health Care Directive and how to apply them in often “gray” medical situations.

Bridging the Gap: A Physician’s Perspective

Because of issues like these, Health Care Directives often fail at the bedside. Besides the limitations of the Health Care Directives themselves, often there are family conflicts and even physician conflicts in their application. However, even close knit families can understand and appreciate that differences of opinion about life and death issues are matters of legitimate perspective and not a flaw in someone’s personality. Unfortunately, studies have shown that having a Health Care Directive made no impact on issues such as how early DNR orders were issued, physicians’ knowledge of their patients’ CPR preferences, or the use of hospital resources.

A recent study published in JAMA Oncology in July 2015 found that from 2000 to 2012, cancer patients significantly increased their use of Health Care Directives, but the percentage of patients who discussed their end-of-life care preferences with physicians or their Health Care Agents did not change. The study suggests that increased use of Health Care Directives may be associated with a failure to have the difficult but necessary discussions regarding end-of-life care. The result is that Health Care Agents are having to make decisions in a “communication vacuum.”

Crucial Conversations

Why are people failing to have the crucial end-of-life care discussions? In our experience, there are a number of factors.

1. Difficult Discussions. These are not easy “dinner time” discussions. Families must be intentional and carve out time to have these specific discussions. They are not likely to just “come up” in casual conversation.
2. Ignorance of the Need. Most people view completion of a Health Care Directive as an end in itself. In fact, it should be the beginning of a process in which you develop and refine your end-of-life care plan. Furthermore, until faced with actually having to make decisions, most Health Care Agents and families are unaware of the nuances, the “shades of gray,” that can complicate medical decision making.
3. Ignorance of the Medical Issues. The tremendous advances in health care over the past 100+ years have changed the way people deal with illness and death. In the 1800s, it was “natural” for a person to die at home due to injury, illness or infection, surrounded by loved ones. Everyone knew what a “natural death” looked like, the body begins to shut down, the person stops eating and drinking. There were no IVs, few medications or medical interventions that would stop the “natural” process. Today, with so many interventions and treatments possible, what is a “natural death?”
4. Geography. Families today tend to be spread out across the country, or even in different countries, which impacts the communication process. In fact, for some families, the health crisis may be the event that finally brings the family together, but perhaps too late for end-of-life care discussions.
5. Fear. Many people are reluctant to face their own mortality or think about the death of loved ones. This subject is unpleasant and difficult to think about, and even more difficult to talk about. It is simply easier not to. People also may fear the reactions of their loved ones to the choices they wish to make. So our natural tendency is to avoid the subject altogether.

People often are afraid that having these types of conversations with loved ones may be misinterpreted as giving up or trying to hasten death. Some fear that such conversations will create intra-family conflict. And some people with strong religious beliefs fear that their decisions will conflict with those beliefs.

Recommendations

So what can you do to bridge the gap, to help ensure that your desired end-of-life care wishes are implemented?

1. Communication is Crucial. You should have a plan for end-of-life care and discuss it with your Health Care Agent. If you want a “natural death,” discuss with your Heath Care Agent what that looks like for you. According to Atul Gawande, “whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?” Hold a family meeting, preferably well before any health crisis, so that all family members know what you want. Need help getting the conversation started? There are a number of online resources available, including theconversationproject.org.
2. Be Proactive with Your Health Care Team. Make sure your health care providers and your Health Care Agent have a copy of your Health Care Directive, and have read and understand it.
3. Make Sure Your Physician has the Correct Orders on Your Chart. Health care providers look at orders, not Health Care Directives. Have explicit conversations with your physician about what you want. If available, have your doctor prepare a POLST: Physician Order for Life-Sustaining Treatment. A POLST is a medical order concerning the patient’s end-of-life care that is developed as a result of conversations between the physician and the patient. POLSTs are currently available in sixteen states.
4. Bring Your Spiritual Advisor in Early. If religion is important to you, bring your spiritual advisor into the discussion. Your spiritual advisor can support you, your Health Care Agent and your family during the process.
5. Ask for Palliative Care. Having a palliative care specialist at the bedside can make a tremendous difference, helping to support you and your family during any serious medical situation. Palliative care is a relatively new medical specialty that involves supporting patient and family choice. Palliative care professionals help to facilitate communication among the patient, family and healthcare providers, and can help the family achieve clarity and consensus in decision-making.

While Health Care Directives are an important component of a complete estate plan, they are only the beginning, not the end goal. Following the suggestions discussed above can help bridge the gaps in the Health Care Directive, helping to insure that your end-of-life care plan is implemented.